Healthy longevity is not only for the neurotypical
Authors: None The Lancet Healthy Longevity
Journal: The Lancet Healthy Longevity (2023)

On June 15, 2023, Donald Triplett died “peacefully at home” at the age of 89 years. Although he was certainly not the first child to show symptoms of autism spectrum disorder, Triplett became a part of medical history as the first of 11 cases of children with “autistic disturbances of affective contact” described in Leo Kanner's 1943 article. 80 years later, the WHO estimate is that one in every 100 children is autistic. Higher awareness from parents, educators, and paediatricians has improved diagnosis and support for autistic children, as has the involvement of specialists such as child psychologists and speech and language therapists. The field has moved away from referring to autism as a disease, which is now increasingly recognised as a facet of neurodiversity—a concept that reflects the broad neurological differences and unique abilities across humans—but stigma and disadvantage persist. For example, less than 22% of autistic adults in the UK are in any form of paid employment (vs 76% of the general population aged 16–64 years). The discrimination that some autistic adults face in the workplace is reflected in paradoxical observations: in Germany, autistic adults reach above-average levels of education compared with the general population, but below-average rates of employment. Such figures are alarming even when looked at individually, but compound to much larger issues when put into the context of the number of autistic individuals worldwide: about 78 million by the lowest estimates. The challenges faced by autistic individuals are not only socioeconomic; they often start with needs as basic as health care. Autism research has developed greatly over the past six decades, but, as reported by Shengxin Liu and colleagues in this issue of The Lancet Healthy Longevity, mental health outcomes have often overshadowed physical health as endpoints. Even less attention has been paid to neurodivergent individuals who are now older adults, and the resulting “absence of evidence creates uncertainty for autistic people, their families and communities, and health-care providers on how to foresee and meet the needs of autistic people as they age”. Autism spectrum disorder is both very broad and highly specific to each individual, so no single adaptation will be enough to improve the health-care experience of all autistic individuals. Yet, the most impactful changes to be made are still at the user-level interface, and immediate adaptations are needed to improve autistic individuals’ access to health care, particularly regarding their sensory sensitivities (such as to light, sound, and touch). Health professionals need to become aware of neurodivergent patients’ potential challenges with self-regulation and attention, as well as of their often extraordinary persistence and resilience. As argued in the Lancet Commission on the future of care and clinical research in autism, dwelling on the neurobiology of the condition is, at this time, less useful to autistic individuals than is investment in clinical and implementation research that can enact true systematic change by reducing stigma, involving autistic people and their families in care decisions, considering the side-effects and interactions of the psychotropic medications frequently prescribed to autistic individuals, and using quantitative and qualitative research to guide informed support programmes for autistic individuals, from childhood to old age. Adaptations at the service-user level are made even more acutely necessary by the fact that ageing with autism is akin to ageing on fast-forward. Data show that autistic individuals have worse health outcomes not just as older adults, but also during childhood, adolescence, and early adulthood, with one study placing the average life expectancy of autistic individuals at just 39 years. Although autism alone does not reduce the lifespan, the fact that neurodivergent individuals can expect a lower life expectancy than do neurotypical people underlines the need for robust health systems, social support networks, and preventive strategies to preserve both health and quality of life for autistic individuals—particularly among geriatricians, who will often not have autism at the forefront of the clinical picture, but who will now be caring for older adults who were children at a time when a diagnosis of autism might easily have been missed. Even though the same cannot be said for all 11 cases in Kanner's report, Donald Triplett's history was, by his own account, a happy one: he went on to become a banker, a keen golfer, and to travel extensively by himself. Although his socioeconomic background undoubtedly played a part, if “autism's first child” could live a long and fulfilling life, there can be no reason for health and quality of life to elude any individual simply because of neurodiversity—no matter their age.